Featured Articles
Access MDA Summer 2016
When Jessica Aviles’ son Gabe was diagnosed with Duchenne muscular dystrophy (DMD) in November 2015, it was a complete shock. “I literally knew nothing [about the disease,]” Aviles says. “I had to look it up in the parking lot.”Over the next six months, Aviles went from knowing nothing about DMD to heading the largest Muscle Walk team at the MDA Muscle Walk of Tampa Bay. Early on in her research, Aviles came across MDA and Muscle Walk and decided to get involved so she and her family could join and support MDA’s cause.
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Challenging the Nation to Live Unlimited
MDA families face daily challenges that often make walking, playing, running, getting dressed, hugging and talking difficult — sometimes seemingly impossible. But these courageous families are defying their limits every day and inspiring a nation to do the same.For example, Davion Bartlett was diagnosed with Duchenne muscular dystrophy when he was 4 years old. He quickly learned as a young child that his disease would never define him or hold him back.
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Strength in Numbers: A Walk to Remember
“I am the captain of the Muscle Walk team Hope for Harrison. The team walks in honor of Harrison, my son, who was diagnosed with Duchenne muscular dystrophy in the summer of 2011. The biggest reason I support MDA is that MDA is about living a full life, including working to ensure those living with diseases like DMD live long, full lives.” — Jessie Aldridge, parent
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Where to Stay When Away
The Horans have 14 cousins. Every year, they make the trek from Denver to Chicago to attend a high school graduation or other special occasion with their relatives. Finding accessible accommodations can be a challenge for this family of five and their bulky medical equipment. The Horans’ three adult sons have Duchenne muscular dystrophy (DMD), and each uses a power wheelchair.
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Progress Now Summer 2016
Results from an MDA-supported multicenter phase 1b clinical trial have shown that treatment with pyrimethamine was safe and well-tolerated and associated with reduced levels of SOD1 protein in people with ALS caused by a mutation in the gene for SOD1.Pyrimethamine is a small molecule approved by the U.S. Food and Drug Administration for treatment in humans of the parasitic infections malaria and toxoplasmosis.
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Four Steps to Booking a Hotel Room for Wheelchair Users
As an avid traveler who happens to be a wheelchair user, I do my fair share of booking hotels. It's a complicated process that I've somewhat mastered over the years. While most people can just go online and book their ideal hotel in a matter of minutes, it's not quite that easy for us wheelchair users. I recently called a hotel to ask if they were accessible, and they told me that they certainly were.
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Living Unlimited Across America
This summer, MDA launched a new campaign called Live Unlimited that was inspired by the stories of individuals and families we serve. Together with our MDA community, we’ve challenged Americans to defy their limits — those we sometimes place on ourselves and those defined by others — and live life to the fullest.
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Earning Potential
Simon Cantos works hard at his job as an inside sales engineer for Carrier Corporation, a leading company in the heating, air conditioning and ventilation industry. “Engineering is extremely difficult, and I want to be compensated properly for what I do,” he says.Cantos, 33, who lives with Ullrich congenital muscular dystrophy (CMD), receives funding for dependent care from a state-sponsored program called Medical Assistance for Workers with Disabilities. He pays an out-of-pocket rate to stay in the program that provides funding for his personal care attendant to help with daily needs. The rate is based on a percentage of his salary and isn’t available once income thresholds are reached. Cantos says he is close to, but hasn’t yet exceeded, that ceiling.
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Quest Readership Survey: We Want to Hear From You
After listening to inspiring individuals with neuromuscular diseases and their families, the Muscular Dystrophy Association (MDA) launched a revitalized brand and new look for Quest Magazine in January 2016. We'd like to know what families think of Quest. Please take a few minutes to fill out the Quest Reader Survey and provide your feedback so we can continue to improve the information and resources we share in each issue.
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Seven Things Every New Mom Needs to Hear
Editor’s note: Read about Colleen Nichols’ experience of having a baby with a little help from technology in Love, Marriage, Science and a Baby Carriage. A college friend recently had her first baby, and after exchanging a few texts, I was reminded that there is a bit of new mom advice that every first-timer needs to hear. The days are long, and when you're unsure of what you're doing and experiencing, it's helpful to know that you're not the only one who thinks motherhood is hard.
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My First MDA Muscle Walk
To be honest, before the 2016 MDA Wichita Muscle Walk, I’d only donated to an organization seeking to find a cure for muscular dystrophy once. I’d grown up as the older sister of a wonderful, unique brother with congenital myotonic muscular dystrophy. Dustin was born when I was three, and I thought that he was just the way he was meant to be, and that I was lucky to have the brother I did.
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